Not in the high risk category, but still …

I wasn’t considered to be at high risk for breast cancer, and yet I got it. I also wasn’t considered to be at high risk for lymphedema, and I have it too.

I was high risk for celiac disease, so that diagnosis, although kind of sucky, isn’t too much of a surprise. I’m now hoping that it is my new panacea (I had hoped that the CPAP was my panacea) – that is, once my body starts to heal itself on a gluten free diet, I hope that many of my health issues clear up.

This post is more about lymphedema. A month ago (Oct 2nd), I noticed that my left hand was swollen. Having been a part of many breast cancer support groups, I knew that this was an early sign of lymphedema. Having only two nodes removed (to ensure the breast cancer had not spread), and not doing radiation, meant that I was at low risk. The only precaution I was told to take was to not allow automatic blood pressure cuffs on either of my arms – because the machines put in too much pressure. Instead my blood pressure is taken on my right leg.

When I noticed the swelling in my left arm, I immediately called my breast surgeon’s office. I saw the nurse practitioner that afternoon. I was scared. She put in an immediate (ASAP) referral to the lymphedema specialist. At the same time I called my physical therapist, who is also a lymphedema specialist.

Then all the cogs in the medical system slowed to a halt. I had to wait a week to see my physical therapist. It took almost two weeks just to get an appointment to see the lymphedema specialist. Those weeks were hell. I had no idea if what I was doing was making things better or worse. I had no information that I could trust. There is so much mis-information on the web, and so little is truly known about lymphedema.

I was glad to get in to see my physical therapist, who put my mind at ease. She prescribed a compression sleeve. I decided that if I needed to wear one that I would get a pretty one. I bought this nice patterned one at Lymphedevas.

Last Wednesday I finally had an appointment with the lymphedema specialist. He formally diagnosed it as stage 0/1 lymphedema. Now that I have it on the left, it changes what I can do on the right. I’m no longer in the low-risk category. He prescribed a higher compression level for the left arm (level 2), and the lower compression (level 1) for the right arm. I was sent over to the cancer center to pick up some new sleeves.

Now, I need to wear the sleeve and glove on the left arm whenever I’m awake (so not for sleeping but otherwise I wear the compression). I need to keep this on until the arm goes back to normal. This may never happen, or may take 6-12 months. I’ve had it for less than a week and I already notice a difference, so that is good. Wearing the sleeve is actually comfortable. My arm hurts when I’m not wear it (a dull ache). The glove makes typing a bit of a challenge, so I’m finding myself relying a little more on speech-to-text (glad it is built into the Mac OS).

On the right side, I now need to wear a sleeve prophylactically (to avoid getting lymphedema). Specifically, I need to wear it: (1) during strenuous exercise, (2) whenever I fly, and (3) whenever I travel above 4000 feet elevation. In addition, I can no longer have IVs or shots (e.g. flu shot) in either arm. I’m still OK for blood draws on the right side – although, I think that will depend on the extent of the draw – the last time I had 8 vials taken (celiac micronutrient deficiency tests), which really taxed my arm, so I think that would be a high risk activity that I would want to avoid in the future.

The new sleeves I have are from Juzo. They are the ones that the doctor recommended. They are not fun colours (skin tone), but they don’t actually look as bad as I feared they would. What I find interesting is my desire to have pretty sleeves. I’m not normally a fashion conscious person. For the most part I wear yoga pants and one of the various free t-shirts my husband picks up at tech conferences. So, I find it interesting that I’m drawn to garments with pretty patterns on them.

Going forward, I’ll wear the plain garments for exercise and when I’m at home working. I will likely switch out to something pretty for those limited times when I’m out socializing. The pretty ones may not be as effective, but they make me feel good – and for a couple of hours now and then, feeling pretty won’t be causing any harm.

In some ways this is similar to my large collection of buffs that I wore when I was cancer-bald. I found myself buying more buffs then I needed (different ones to match different outfits). They made me feel good. And so, with that, if I am destined to wear the sleeves for the foreseeable future, I might as well get a few that I like to wear.